I recently attended routine breast screening at the mobile unit in Lerwick. Last week, I had a ‘recall’ letter to say my x-rays were inconclusive, and an appointment had been made for me at the Breast Clinic in Aberdeen. I went to Aberdeen yesterday and was seen by Dr Deans’ team – who were great; I felt I was in very good hands. I had ultrasound and core-biopsy and was able to leave the clinic by lunchtime. I asked about results of the tests, and was told that each Wednesday, Dr Deans’ team hold a multidisciplinary meeting to discuss cases (such as mine) from the previous week. When a case involves a Shetland lady, medical staff from Shetland join the meeting by video-link. I was told that my case would probably be discussed next Wednesday and that ‘someone in Shetland’ would contact me with the outcome. It was not possible to be more precise than this. Before I left the clinic, one of the nurses gave me a yellow leaflet containing information about the procedure (core biopsy) I had undergone. I noticed that on the front on the leaflet, there was a section that said ‘Next appointment and time’. The nurse explained that Aberdeen patients who came for review were given their next appointment before they left the clinic – ie, they would leave knowing the date, place and time they would get their results.

This is in sharp contrast to Shetland patients. I have come home with no clear idea of when, where, how and from whom I will get my results. Will I get a letter? Will someone try and phone? If the latter, will they phone me at home – which will be pointless, as I’ll be at work! Worse still – I go on holiday soon, will I have my results by then? I’ve no idea.

Let’s be quite clear. Going for a review and having more tests is very frightening because of the natural fear that those tests will reveal malignancy. Staff at the Breast Clinic in Aberdeen are just superb – reassuring and professional. But on leaving the clinic, it can feel that Shetland patients fall into a sort of ‘black hole’ of uncertainty. That’s certainly how I feel right now. I fully accept that tests have to be assessed and discussed and that does take time. But I don’t feel it should be open-ended and to me it is unacceptable that Shetland patients leave the Breast Clinic in Aberdeen without knowing when, where or how their results will be given, and without having a point of contact in Shetland to go to for advice or reassurance whilst waiting. It should not be assumed that because we live in a comparatively small community, we automatically know.

In closing, six years ago after routine screening I had a recall to Aberdeen, and then the situation was similar – a lack of clarity about how, when and by whom results would be delivered, and a delay in receiving them, which caused significant distress. I’m naturally disappointed that this situation is still arising, because I think it’s avoidable by providing women with just a little more information. I would welcome the opportunity to discuss this constructively.

Responses

Response from
NHS Shetland 3 years agoWe are preparing to make a change

Thank you for leaving detailed feedback about your experience of the breast screening service. It is really important to us to know how well the pathway is working for people travelling between Shetland and Aberdeen for tests and treatment. We didn’t appreciate that there was a gap in the communication about how test results would be sent back to patients and we will rectify this.

I would like to follow this up for you now and find out specifically how (and when) the results will be sent back to you – in order to do this, please can you contact me by email or phone.

Response from
Kathleen Carolan, Director of Nursing and Acute Services, Nursing, NHS Shetland 3 years agoWe are preparing to make a change

Thank you for contacting me directly and agreeing that I could share the changes we have made following your feedback.

You explained that when you left the clinic in Aberdeen, no contact details were given to you and the process of how you would get your results was not explained. I spoke to the Breast Care team locally and colleagues at NHS Grampian and we have agreed that by developing a simple business card with contact details for the Breast Care Team, Shetland Secretary and the OutPatient Department - we should be able to ensure that women who access the breast screening service do not leave the appointment without this key information in future. In addition to this, we have added a prompt to the card so that we ask how the patient would like to be contacted as this can also delay messages about organising appointments for further tests and results.

The business card is just about to be put in place with the leaflets that patients receive. I wanted to take this opportunity to apologise that we did not explain what would happen next after you had your tests and also to thank you for providing the feedback. It has prompted a real change in the way we communicate with patients across services and made us think about other patient pathways where patients may also be experiencing difficulties accessing information (e.g. other screening programmes). I have said I will work with NHS Grampian colleagues to look at these other pathways in more detail.

NHS Grampian is grateful for this feedback. We have discussed the situation with Kathleen from Shetland and will work with her if we identify any other pathways of care where similar problems exist. Many thanks for bringing this to our attention and for prompting this important improvement work.